Autonomy

The principle of autonomy supports the right of competent patients to make their own health care choices. An individual who makes an autonomous choice acts intentionally, with understanding and without external controlling influences.¹⁰ An idealized expression of autonomy occurs when a competent adult chooses voluntarily and intelligently from among various options whose relative risks and benefits have been fully explained to him or her by the physicians (i.e., via a truly informed consent process).

The term parental autonomy is often used in the context of neonatal care without making a distinction between that term and parental authority, although most argue that autonomy can strictly be used only when making decisions for oneself and that parental authority is the more correct term when referring to the role of parents in decision making for their newborn infants. The use of parental autonomy may be appropriate, however, when a parent has a vision of what it means to be a good parent, and it is necessary for that parent to choose to be allowed to parent in that self-directed way.

There are at least two primary reasons why neonatal health care professionals should show respect for parental authority/autonomy: (1) because of the presumption that parents will make decisions that are in their child’s best interests, and (2) as a means of promoting a shared decision-making model with physicians. Physicians need to be conscious of the impact of their authority and the power that derives from expertise or that follows from information given in a convincing manner. They also have to recognize that parents’ ability to reason and to act in a self-directed way is often challenged in the presence of serious illness in their newborn infants.

Not everyone wishes to be the primary decision maker, and indeed there is a body of evidence that sometimes the prevailing bioethics emphasis on autonomy and self-determination is overwhelming to parents.66,92 Numerous studies show that respect for mothers’ or parents’ autonomy does not require physician adherence to a strict informed consent interaction; a more nuanced application of this respect can be satisfactorily achieved by including parents in decision making within a trusting parent-physician relationship.^44,65 This inclusion may be more important than the parental “right” to make the final decision per se. Parents’ insistence on their right and role as final decision maker may become their stance only after a breakdown in communication or when respect for their role in a shared decision-making process has been disallowed or denigrated.

Too rigid or simplistic an interpretation and application of respect for parental autonomy by physicians is also problematic, such as when agreeing to a parental statement that “we want everything done.” Without exploring what underlies this declaration, physicians may neglect the complexity of the situation and the underlying parental fear of “abandonment.”³⁰ Finding the right balance between respect for parental autonomy and the physician’s role and responsibility in any decision-making process requires insight, empathy, and great analytical and communication skills.

Beneficence

Beneficence is the obligation of health care providers to “do good,” that is, to promote the best interests of their patients. In newborns, this obligation is embodied in the concept of the “best interests of the newborn.” This is a moral and legal standard of judgment that helps to establish the primacy of duties to infants, ensuring they be regarded as fully human individuals with interests, even when clearly unable to express their own value system. Pursuing a course of action in the best interests of an infant implies determining what treatment course has a more favorable benefit-to-harm ratio than other possible options—whether the treatment is likely to improve the newborn’s condition or well-being, prevent it from deteriorating, or reduce the extent or rate at which it is likely to deteriorate, and whether the newborn’s condition is likely to improve, remain the same, or deteriorate without the treatment. It also requires consideration of whether a less restrictive or less intrusive treatment course would be as beneficial as the treatment that is being proposed.

Determination of best interests requires an assessment of the child’s potential quality of life. Quality-of-life considerations encompass the predicted cognitive and neurodevelopmental outcome, the potential for motor disability or other physical handicap (e.g., vision, hearing), and longer-term concerns such as behavioral and learning difficulties or school problems. It also considers the requirements for repeated or prolonged hospitalization, surgery, or medication, and the potential for pain and suffering to be endured. Quality-of-life considerations may also include less concrete medical states, such as the capacity for meaningful and potentially enjoyable interaction with other people and the environment.

The standard of best interests of the newborn acts as a threshold for judgment, yet the subjective nature of this assessment and the fact that the assessment is being done by surrogate decision makers must always be recognized. Additionally it is imperative for clinicians to be aware of their limited powers of prognostication. Repeated studies by Meadow and colleagues have shown that when health care professionals predict that an infant will not survive to discharge, they are incorrect relatively frequently. The procedural question of who are the rightful decision makers is of pivotal importance when parents, physicians, and nurses have different assessments of what is in the infant’s best interests. Consider parents who believe in the preservation of life regardless of their infant’s neurodevelopmental outcome; their perception of the benefits and harms of aggressive intervention may be quite different from the perception of a physician who places greater value on quality of life and relief of suffering. The best interests standard is not only a standard of judgment, but also a standard for possible intervention, if it is perceived by rightful decision makers that the infant’s best interests are not being served by a particular course of action. Diekema has suggested that the more conservative “harm” principle be applied in overriding parental wishes. By this principle, rather than determine the “best interests,” a harm threshold will be determined below which the parents’ decision will be overruled.²²

In most jurisdictions, the state confers the responsibility for health care decision making on the parents of young children because parents have a unique relationship with their children—one of concern, obligation, responsibility, and intimacy. Recognition of parents’ moral authority in decision making presumes that parents would normally act to promote their children’s best interests and endeavor to make health care decisions in that light.

The concept of best interests engenders much debate, not only because of the subjectivity of its assessment, but also because some authorities believe the concept is too complex. Defining “best” may be unattainable; it is culture specific, it is too individualistic, and it ignores the interests of others. The concept does imply, however, that the child’s best interests should be pursued, even sometimes to the exclusion of family interests. Other authorities argue that it is legitimate for physicians and parents to consider family interests in making health care decisions for a sick newborn.³⁵ It has been shown that most neonatologists ascribe to an incorporation of family interests into decision making for their incompetent patients.³⁴

Despite these definitional difficulties and suggested alternative standards such as the “harm” principle, “best interests of the newborn” is accepted as a guiding principle for decision makers to use because it unites under one standard different meanings and exhibits reasonableness, given the prevailing conditions.⁴⁸ Properly understood, the concept can serve as a powerful tool in settling disputes about how to make good decisions for individuals who cannot decide for themselves.

Nonmaleficence

The principle of nonmaleficence implies an obligation not to inflict harm on others. It has been closely associated with the maxim primum non nocere (first do no harm).¹⁰ Although beneficence incorporates preventing and removing harm as part of promoting “the good” of a patient, the injunction not to inflict harm remains a distinct principle and requires intentionally refraining from actions that cause harm. Such harm is generally interpreted as physical harm, especially pain, disability, or death. Nonmaleficence requires that no initiation or continuation of treatment be considered without regard to the infant’s pain, suffering, and discomfort; in situations in which a treatment is perceived as overly burdensome or harmful without foreseeable benefit, it should not be undertaken. This is especially relevant given a historical context in which attention to pain in neonates has been sorely disregarded, to the degree in which surgeries were performed without anesthesia.

Justice

Justice is the dominant principle relating to social cooperation. It is expected to determine how social benefits, such as health care, are distributed via justified norms that are the product of human choices and values. Although justice is regarded as a guiding principle for any health care system, no single simple, ideal implementation of it can suffice or satisfy all who wish to receive resources and be treated in ways that safeguard their rights. Generally, concepts of justice range from the broader utilitarian calculus to promote the greatest good for the greatest number in underwriting the distribution of resources (macroallocation) to a more narrowly focused equality of opportunity for each individual (microallocation). Justice in the distribution of resources would require that (1) patients in similar situations have access to the same health care, and (2) the level of health care available for one set of patients takes into account the effect of such a use of resources on other patients.

Reasoning in the context of allocation of resources for the individual patient allows that fairness is an important consideration, but is not the fundamental standard in this interaction. Microallocation issues are very rarely appropriate at the bedside, although some consistency between macrodistribution and microdistribution must exist if the two systems are to operate smoothly because the two are inevitably linked.

In every system, the provision of neonatal services requires guidelines to be developed for determining appropriate use of these costly and often limited resources. Priorities must be set and justified by authorities in decision-making positions. Any changes in the way neonatal care is delivered also need to be fair and accessible, and open and challengeable. Disputes should be worked out based on the acceptance of objective measures and trust in the integrity and fairness of the process and the individuals responsible for management of the process. The United States has recently seen justice principles fiercely debated as the country debated questions of whether health care was a “right,” the extent of individual versus societal responsibility for health care, and who should pay for health care. With greater attention being paid to health care costs, there is little question that how resources for sick newborns are used and justified may become more critically and ethically questioned.

Teams and Communication

Although it is important that the responsible physician attempt to integrate all of the important information and maintain a consistent relationship and pattern of communication with parents, neonatal intensive care is provided by many clinicians with expertise in different fields. This situation requires an understanding among the team members of the differences in responsibility in communication with parents, such as when conveying day-to-day quantifiable, objective information, or when communicating severe diagnoses or the more speculative, prognostic significance of specific findings. Although the responsibilities of each discipline are generally known, in certain situations communication boundaries may need to be defined to minimize fragmented and inconsistent information. Interdisciplinary meetings, in which all the practitioners involved with the patient share their findings and perspective, are crucial in ensuring that consistent patterns of communication are maintained.

It is sometimes said that the ability to communicate is innate. This is not, however, borne out in the literature. For both family and team interactions, it needs to be understood that communication is a primary skill that can and should be improved and developed throughout one’s career.

Family-Centered Neonatal Intensive Care

Family-centered care is a philosophy that acknowledges the sick newborn infant’s place within the social unit of the family. It also acknowledges that cultural, emotional, and social support by the family is an integral component of the infant’s care. Family-centered care shapes policies, programs, facility design, and day-to-day interactions, but should reflect values and attitudes just as equally as protocols. The potential benefits of a family-oriented approach include improved parental satisfaction with care and decision making, decreased parental stress, greater parental ability to cope with their infant’s appearance and behavior, improved success with breastfeeding, and increased parental comfort and competence for post-discharge care.²³

Recognition of the child’s place within the family highlights the cultural, religious, and spiritual dimensions of families’ lives and may bring to light significant diversity within these domains. In a pluralistic society, parents and physicians are unlikely to share the same values, cultural systems, personal histories, and experiences, and at times of stress these differences may present health care providers with significant challenges.

The first challenge is to recognize, understand, and respect the cultural, religious, and spiritual views and values of parents and families. Meeting this first challenge is crucial because misperceptions caused by a lack of sensitivity can lead to inappropriate care or poor clinical outcomes. Cultural competence is more than sensitivity to cultural norms different from one’s own. Cultural competence implies an ability to interact effectively with people of different cultures and comprises four components: (1) the individual’s awareness of his or her own cultural worldview, (2) the individual’s attitude toward cultural differences, (3) the individual’s knowledge of different cultural practices and worldviews, and (4) the individual’s cross-cultural skills.⁵⁷ Developing cultural competence results in an ability to understand, communicate with, and interact effectively with people across cultures.

The second challenge for neonatal health care providers involves the limits of tolerance—where to draw the line between accepting patterns of decision making between couples or within families that contrast markedly with the prevailing cultural norm of shared parental responsibility for decision making. A third challenge arises because not only are parents and physicians products of their own respective cultures, but also their interactions occur within a further “culture”—that of medicine and intensive care itself—with its own values, assumptions, and understanding of what should be done.

Although the health care team should recognize how families’ interests are shaped by social, cultural, and other contexts, it is important not to stereotype the members of specific social, cultural, ethnic, or religious groups. Individuals’ affiliations may not be predictive of their beliefs and values in the care of their infant, and the health care team should regard each patient and family as unique and attend carefully to their specific views and values.

When attentiveness to the views and values of families is difficult because of language barriers, professional interpreters should be used. Use of an interpreter is advisable for three reasons: (1) it ensures that parents’ views are available to the health care team, (2) it removes the burden on family members or friends for the transfer of information, and (3) it limits the potential for miscommunication. In certain situations, a cultural interpreter not only can facilitate language comprehension, but can also provide useful information about cultural norms and traditions that are unfamiliar to the health care team. Access to high-quality interpretation services is an essential component of ethically and culturally sensitive care that also satisfies a regulatory requirement and decreases medicolegal risk.

Religion and the more general concept of spirituality as a major determinant of culture, tradition, and family values often needs to be addressed with parents, particularly when end-of-life decision making is undertaken. A qualitative questionnaire study completed by parents after their child’s death revealed the emergence of four explicitly spiritual/religious themes: prayer, faith, access to and care from clergy, and belief in the transcendent quality of the parent-child relationship that endures beyond death.⁷⁵ Other significant themes with a religious/spiritual dynamic included finding meaning, hope, trust, and love. Similar findings were obtained in a study focused on the delivery room consultation: Mothers stated that religion, spirituality, and hope were the major factors that guided their decision making.¹² The implication of these studies is that health care teams need to consider whether they have or need to create an environment that is hospitable to, and supportive of, religious or spiritual practice, that clinical staff recognize parents’ spiritual needs and provide access to hospital chaplains and community clergy, and, on a deeper level, appreciate parents’ religious and spiritual perspectives in prenatal consultations and end-of-life discussions.

Consensual Decision Making

Consensual decision making implies that the parents and the physician/health care team are involved in the decision-making process—that they share relevant information with each other, they express their treatment preferences, and when a final decision is made, all parties are in agreement. The ideal consensual decision is one in which neither party feels individually responsible for that decision. Parents often feel burdened by what they perceive as their responsibility for the decision. When the process of consensual decision making is handled well by the physician/health care team, the burden of the consequences of the decision is shared.

Team Consensus in Ethical Issues

How teams that normally function synergistically in terms of purely medical matters operate when dealing with ethical issues may be very challenging, not only because of the difficulty in defining roles and responsibilities in matters of ethical deliberation, but also from a more fundamental aspect in that the two major professions, medicine and nursing, have differed over time in their preparation for this practice.⁸¹ Medical professionals tend to view their role as one in which the best science is in the patient’s best interest, with less attention to deeper questions such as the goals and limits of medicine and the moral core of the profession. Seeing things from the patient’s point of view, relating to the patient’s family in a nonjudgmental way, emphasizing the healing potential of communication, and having respect for patients’ informed choices seem to be more intrinsic to the nursing tradition. In interactions concerning the end of life of a neonate, physicians see the focus of their moral obligations on decision making with parents, whereas neonatal nurses see their moral obligations focused on the process and moment immediately surrounding death.²⁶ What is needed, according to Storch and Kenny,⁸¹ is “shared moral work”: Interprofessional practice implies that individual health care practitioners are aware of their own professional values and the need to work collaboratively, build understanding, and work toward resolution with other professionals, particularly when different perspectives threaten team function. The beneficial effects of multidisciplinary participation and perspectives have been well shown in teams developing guidelines for decision making, such as those at the limits of viability.^9,43